The amazing physicians that support and surround Emmett cannot answer the tough questions that all of us have about Emmett. The very obvious 'Why Emmett?' The understandable question of how long do we have? Emmett's condition is that of a very medically fragile little angel and there is no timeline. With even the longest timeline simply being vastly too short. Josh put it best the other night when he said that we just go day by day, and make the most of each moment. Now we are left with the challenge of finding out how to make the most of the moment, without pushing Emmett beyond what he can handle. Or Alisha and Joshua.
This post was initially to be about our road trip to BC Children's Hospital where, yesterday, Emmett underwent a swallowing study. Emmett and his entourage (Alisha, Josh, Rhonda, Pam, and myself) headed to Vancouver in Roger's pickup. It was the only vehicle we had that would hold all of us. A road trip of epic proportions with Emmett at the centre! We were all excited. Our day began when a care package from CureSMA had just arrived for Emmett - a wagon, sheepskin, floor mobile, and a bunch of other great stuff. All specifically chosen to work and stimulate a little boy with limited muscle control. And we had a great day! Emmett's tests were good to our eyes - he took every ounce of Barium fortified formula that they gave him. In fact, when this purely breast fed little boy was given baby cereal and Barium on a spoon, he took it like a star. And it isn't because Josh and I have been feeding him ice cream with a spoon, because we haven't! We were both too afraid of Alisha to do that! Trained eyes did see some areas of concern, but they were just concerns. Nothing too huge. Yet!
This post changed in the early evening, while all of us were relaxing at home. Rather than an evening at home, we spent the evening in Emergency at Abbotsford Regional Hospital - and Emmett was admitted for overnight observation. At home he had stopped breathing. In one moment our already challenging world became next to unbearable. We are living our families' worst nightmare.
It was a normal evening. We were all in the living room chatting about the day when Josh and Pam left to set up a movie so that we could all unwind. Emmett was in the room, on his newly favourite sheepskin, while Alisha and I were checking out (okay, playing with) the items that had arrived in the care package from CureSMA.ca - and it was fabulous. That's when I noticed Emmett's eyes. Always so expressive, this time Emmett's eyes were a mix of panic and a call for help. Then I noticed that his constantly moving stomach - remember, he's a stomach breather - wasn't. His eyes pierced my soul. I didn't say anything to Alisha - I knew I had to be wrong. I felt his tummy but there was no movement. I don't remember if I got down to feel his breath or picked him up to feel it - I think I got down (I was almost there already working beside him) - and there was nothing. I grabbed him up, maybe started patting his back, and Alisha saw only a look of pure panic on my face. I was about to yell to her to call 911 when I heard a breath. And shortly after a cry. Alisha was now verging on panic and I couldn't get the words out. I showed her Emmett was okay, but she still didn't know that he hadn't been. Emmett's crying was the best sound I've ever heard. As he was crying I finally got out that he had stopped breathing.
One moment. Our world has shifted violently again. It was only two weeks ago we got the diagnosis of SMA Type 1. We knew this was coming. But we still aren't ready. Likely, it was saliva that simply blocked Emmett's airway. There was no sound. No gasp. No choking. Just his eyes! Dear God, just his precious eyes.
Josh and Pam came running and we packed up an overnight bag and off to the hospital. We were admitted as soon as they heard that Emmett had stopped breathing. The Emergency Staff was all great. After spending the evening in Emergency, Emmett was admitted to Paediatrics where he has had a good evening. I'm not sure that the rest of us had a good evening, but Emmett is so much more resiliant that we are.
Emmett was seen by the oncall paediatrician already this morning (Thursday). There's a possibility that he will be staying longer. He is smiling and loving the attention that he's getting! This little boy has an amazing heart! We all love him so much!
Day by Day - I think we will update that to Moment by Moment!